Friday, 29 December 2017

Guys, I'm sitting here at my little desk, hot coffee close by, and I feel a beautiful sense of contentment.
Rich is sick, but we have a diagnosis, and one week in, we can see that the treatment is working. It will be a slow discovery, but every step towards health is a step in the right direction, and gives us more confidence and joy. Yesterday he drove himself into town for the first time in 5 weeks, and visited a friend on the way home. While he was in pain afterwards and needed to rest, it felt wonderful for him to do something "normal" by himself! He even helped me with the night chores, which made it the most productive day in a very long time.

Saturday, 23 December 2017

Last Monday I called the doctor's office, heart pounding. "Are my husband's test results back?"
I heard the clicking of the keyboard, the breathing of the receptionist, and nothing else. 5 seconds, 10, 15 - it felt like an eternity.
Then: "Yes, they are."
Me: "And???"
The receptionist: "Did the doctor call you?"
Me: "No!" I wouldn't talk to you if he had, I added silently, exasperated.
The receptionist: "He would have called you if there was anything. It must have been negative."
The disappointment hit me hard and fast, like a punch in the stomach. I knew that there was a good possibility of that happening, but still - I made an appointment for Rich to see the doctor later in the week, and hung up.Fuck, I muttered to myself.
Rich was still sleeping, and I was in no rush to tell him the bad news. Not knowing what else to do, I sat down in front of the computer to learn more about Lyme Disease.

What I found reads like the script to a movie:
In the early 1970s, a debilitating mystery illness was making the rounds in the small town of Lyme, Conneticut. Several people were plagued by unexplained headaches, skin rashes, swollen knees and excrutiating pain. Doctors couldn't find a cause. The patients kept suffering, while the medical community tried to figure out the reason behind these symptoms: was it something in the air or water? What had caused the rash? While the symptoms varied widely between patients, they all had one thing in common: they had all been bitten by a tick.

It wasn't until 1981 that the scientist Willy Burgdorfer discovered the bacteria responsible for the disease. In honour of his discovery, the bacteria was named after him: Borrelia Burgdorferi.
Borrelia is sneaky. It doesn't circulate in the blood but interacts directly with the cell tissue it infects, making it difficult to detect. It also replicates slowly, meaning the number of bacteria found in the patient stays small. These characteristics are responsible for the difficulty of diagnosing Lyme Disease; those damn bacteria hide well.

To diagnose the disease, the doctor has to not only look at lab results, but also take into account the medical history, symptoms and exposure to ticks.

I felt better.

In the meantime, Rich had woken up, and I shared everything I learnt.
"I wish I could just talk to somebody," he said wistfully.
"Let's see what I can do," I replied.
I went to my trusty Canadian Lyme Disease Foundation, found a contact number, dialed and handed the phone to Rich.
After 2 rings, someone picked up. An actual person, not a computer! Turns out, we had managed to get Jim Wilson on the line, the founder of the Canadian Lyme Disease Foundation.

He took his time listening to us, and shared a bit about his and his daughter's experiences with the disease. Just talking to someone who knows what you're going through is such a gift!

He also told us something important: Rich may have gotten infected in Germany by the European strain. He was very sick when he was 8 years old and was hospitalized for 6 weeks at that time. The tentative diagnosis was rheumatic fever, but the truth is, they never figured out what was wrong with him. He slowly got better, but he still remembers the doctor's dire prediction: that he may be in a wheelchair by the time he was 40 years old.

"It sounds like you may have contracted Lyme Disease back then," Jim said. "If it's never treated, the bug will stay in your system all your life. You need to get tested for the European strain, not the North American one. I can give you the name of a specialist for Lyme Disease here in BC." And he did. Dr. DeMonte is a naturopath and Lyme Disease specialist, who herself has Lyme Disease. After reading her own harrowing story, I knew we have to meet this woman.
We made an appointment for January, and felt hopeful again.

But that's not all. On Thursday, I ran into our doctor at work. He works at my hospital, and I usually see him at least once a week. Every time we see each other, he asks about Rich.
"We were bummed that the blood test was negative," I said.
"It wasn't," he replied. "The screening was positive, just the follow-up test was negative."
Say whaat?!?

I'm still confused on the specifics about Lyme testing, but what I do know is that it is a Two-Tier Testing process. The first is a screening test that detects if someone has the disease. The second test is to confirm the diagnosis.
Since his test results are ambivalent, we will get yet another one done that will be sent to Germany to test for the European strain.
But due to his symptoms, medical history and positive screening, he has been officially diagnosed with Lyme Disease, and we started his antibiotic treatment two days ago. Is it a coincidence that this happened on the winter solstice? One of the comments I received upon sharing the happy news on Instagram was this: "It's interesting ... Yesterday was the solstice which is the turning point from encroaching darkness to the return of the light. This sounds like your and Rich's personal solstice."
I LOVE that.

Finally knowing what's been going on since August is incredible. We are positively giddy with relief. It may seem strange to be relieved about a serious illness, but the not knowing was horrible.
If it weren't for this blog and Michelle's helpful comment, we still would have no idea what's causing Rich this debilitating pain.

We are feeling very grateful. This has been our personal Christmas miracle.

Sunday, 17 December 2017

In case you're stressed out right about now (and you probably are, it's a busy time!), I have a solution for that. Drop everything you're doing, pour yourself a cup of coffee or hot chocolate (don't forget the peppermint schnapps, it's Christmas season after all!), and indulge in some Instagram.

But not the kind that makes you slightly angry because everybody's life seems so much more perfect than yours (even though that's an illusion, and you know it), but in the kind that gives you the warm and fuzzies.

Thursday, 14 December 2017

I'm scrolling through Instagram, and when I see a post about Sedona, I get a sudden jab of pain right in my solar plexus. We wanted to go there in January.

I wonder if we will ever get to see it now?

My friends tell me they miss us, and ask when we'll come down for a visit.

If things continue the way they are, it will be only me. Or none of us, because I can't leave him.

I go to work, do chores, go to every doctor's appointment with him, do all the shopping, cooking and cleaning, pay the bills, do his business correspondence, administer medication, soothe, listen, go back to the doctor for more medication, clean up messes, respond to worried friends' emails, ward off intruding visitors he can't handle, and do more chores. And I do it gladly, because I love him.

But sometimes, I resent it.

I wonder: is this our life now? Will it always stay like this?

Omg. How can I learn to live with this?

I haven't shared much about my husband's mystery illness until recently. I don't know why. Maybe I was hoping it would just go away one day. Don't acknowledge it, and it's not real.

Every morning, I'd ask him, hopefully: "How do you feel today?"

And every morning, without fail, the same miserable answer: "Terrible."

It's been 4 months. 4 months of pain, grouchiness, uncertainty, fear, brief hope, only to be dashed the next day by an attack worse than anything we've had before.

I can't tell you what it feels like to live with chronic pain. I've never had it. My husband is the one who has been suffering from debilitating pain, yet "everything is normal" test results for the last 4 months. As you may know or can imagine, it's beyond awful.

I think the only reason why I can talk about it now is because we have hope. We think we may have figured out what his mystery illness is. We are currently still waiting for the results of the notoriously unreliable blood test, but we need hope (and we believe in the power of positive thinking), so we pretend that the test will come back positive, that he will start on antibiotics, and that "in 2 weeks, everything will be so much better!" We cling to that. We need it.

Rich is wrapped up in his illness. He's on the couch/in bed 90% of the time, only venturing outside once a day to feed his birds, because he feels better (physically and emotionally) when he does.

But what about the caretaker?

What about me?

I still have to live in the everyday world. I have to deal with all the little and big nuisances that crop up in a normal life, while having to stay positive and upbeat for Rich's sake.

How do I keep my sanity?

In the last few months, I have developed a few routines that help me cope with my normal tasks, his illness, and all the extra crap that you have to deal with when your love is suddenly out of commission, scared, and in dire need of you.

1. Don't take it personally.
He gets crappy. He is in constant pain, he can't sleep, all of life's joys are suddenly taken away from him. He is scared, and uncomfortable, and he doesn't know what's going on. It's understandable that he is crabby. Omg, we all would be!
But, I'm just a person. I have my own shit to deal with, in addition to his illness, and sometimes I get sensitive, and I get hurt, and I want to scream at him that "I can't take it any more!"
But, of course, neither can he, and we're back at square one.
We talk very openly about each other's feelings, and he knows (and understands) how frustrating it is for me as well.
The most important fact about this is to remember: It's not about you.
We both have to deal with a shitty card that's been dealt to us, different for each, but shitty just the same. In the end, we have to remember: We are in this together. 2. Make time for what makes you happy.
I need to walk. Need to. If I don't walk, I get antsy, and angry, and dissatisfied, and slightly stabby. So, in the name of public safety, I carve some time out every day to walk in some form or another. It may be a long, satisfyingly strenuous hike uphill. Or it may be just 10 minutes around our own property. Whatever it is, it's me and the dogs, and usually a story in my headphones via audiobooks, to transport me away from the everyday hassle to my happy place.
I swear, it works every damn time.

3. Escape.
Don't be ashamed when you want to escape for a while. I do it every single day. I love our life, but I'm really afraid that our current situation might turn into a permanent one. To escape the incessant obsessing, I like to immerse myself into other people's lives for a while. I've been watching Mad Men almost since the beginning of Rich's illness, and witnessing all the drama and the desperate housewives' lives on there makes me feel grateful for my own.
I've also been reading lots this year, and listening to audiobooks as much as always, which gives me great comfort.

4. Share.

Writing is my life line. It's kinda impossible to describe what it feels like to share my struggles on here. It's - well, it gives me peace. Clarity. Insight.
It makes me feel like I'm doing what I'm supposed to be doing, in the place I'm supposed to be doing it in, with the person I'm supposed to be doing it with.
It feels good. Right.

5. Don't be hard on yourself.

You know, for a self-proclaimed yogi, I should be doing yoga all the damn time, and get all the above benefits from it.
Well, I don't. I'm a flawed yogi. By the time I have done chores, work, walked the dogs, cooked dinner, and spent some time with Rich, the last thing I want to do is yoga. I plop myself down in front of Mad Men, pour myself a glass of wine, and veg out. And I made myself be okay with it. It won't be permanent, but for now, I only have the energy for a couple of yoga sessions a week. And that's just the way it is. It has to be okay. It is okay.

6. Be amazed at yourself.
To be honest, I've expected to burst into tears every day for weeks now. Yet, it still hasn't happened.
Every time I get angry outside at having to carry another fucking heavy hay bale to the horses, I simultaneously think of a story I could write about it, and I smile inadvertently.
When I come to work, weary and in a less than cheery mood, one of my co-workers will make me smile, just by being their cheerful, black humoured-selves (who can be down when you hear about the "poop cloud"? Remind me to tell you that story some time.)You are much stronger than you think. Be proud of yourself. You deserve it.
xoxo Miriam

Sunday, 10 December 2017

I click on the website and start reading. At this point, I have done this dozens of times, and I would be lying if I said I have much hope that this will be a solid lead. Probably just another dead end.
I skim the list of symptoms: bone pain, joint pain and swelling, tennis elbow, stiff neck, muscle pain. My eyes widen, and I start to read more slowly. All of these apply!
The list continues: night sweats, unexplained chills, chronic fatigue, shortness of breath.
Then there are mood swings, unusual depression, insomnia, sleep apnea, memory loss.
And the clinchers: "pain migrates to different body parts", "continual infections (i.e. sinus)", "increased effect from alcohol and possible worse hangover". Check, check and CHECK!

My heart is beating fast now. This is it! This must be it! Rich has every single one of these symptoms!
The disease?

Lyme Disease.
Lyme disease is an inflammatory disorder that is spread to humans through tick bites. Ticks pick up the bacteria through infected animals like deer, mice, or birds, and pass it on to whoever is unfortunate enough to be bitten next.
Lyme disease is sneaky.
It is dubbed "the mystery disease" by some due to the difficulty to diagnose it. There are more than 100 symptoms associated with Lyme disease, which may or may not show up immediately. In many cases, patients won't have any symptoms for months or even years. If you are bitten by a nymph tick you may never know it; they are the size of this period →.

Some people get the telltale bulls-eye rash, but many people don't. Blood tests often come back with false negatives, particularly in the early stages of the disease. The test is looking for antibodies in the blood, and they need time to develop.
To make matters even worse, there is no universally accepted test for Lyme disease; apparently, Lyme tests in Canada are largely flawed (source).

How did we come up with Lyme disease as a possible diagnosis for Rich's mystery illness?
One of my readers told me! Michelle D. mentioned it in a comment on a recent blog post, and for that I am extremely grateful. She herself wasn't correctly diagnosed for over a year, despite seeing numerous doctors and specialists.

After she told me I immediately booked an appointment with our doctor, who listened and agreed with us. We have now done the blood test and await the results, which will take another week or two. Despite not knowing if that's Richard's diagnosis, we feel hopeful for the first time in months, and that is a precious, precious gift. Chronic pain is horrific, but not knowing what causes it is almost too much to bear.

Wednesday, 6 December 2017

it's your birthday today. You've been 38 for about 18 hours, which means you have roughly 8,742 hours left of your time as a 38-year old.That's lots of time. Don't panic.
Seriously. Stop with the panicking!Okay. Deep breaths all around. Feel better now? Good. Let's reflect on the last 38 years for a moment, okay? Just for shits and giggles. I know you sometimes feel like you haven't accomplished that much yet. Let's recap, shall we?

Monday, 4 December 2017

It's been a while since I shared a few photos from around here! We had a massive snow dump at the beginning of November, which seemed way too early for everyone involved. Luckily, it melted after 10 days, and the next snow waited respectfully until December to arrive. It's been positively magical!

The dogs and I have been hiking every day lately, and their exuberance is infectious.

You all know my boundless love for dogs, and reason #847 for it is their ability to enjoy life to tremendously. They are an example to all of us!

I'm Miriam, 38, a dog-loving, yoga-obsessed farm wife living in the 'wilderness' of Canada. After being vaguely dissatisfied with my life for years, I decided to hell with fear, and embarked upon a life realizing my dreams. My husband and I moved to a ranch in a small cowboy town where I work at the local hospital, I wrote a book (coming out soon!), and I'm happier than I have ever been. Since my husband's Lyme Disease diagnosis I'm passionate about educating people about this mysterious illness (read more here).I've been published by Thought Catalog and SheSavvy, write a Newsletter, and work on my second book. I've made it my mission to show others that we can all live our best lives!